When parents drop off their children affected by disability, whether those children are young or they are adults, you probably see a wide range of emotions and approaches.
For example:
- Mama or Papa Bear – You know these parents because you can feel the fight in them even as they round the corner.
- Parents who drop off and run away fast – BEFORE you get to ask any questions because they are afraid you will not take their child if you knew more
- Entitled parents – Give the attitude that you owe them and that their child should be prioritized over everyone else all the time.
- Wounded parents – These parents may be feeling rather defeated. Maybe that is because they have been shamed by extended family, educational and medical professionals, and even strangers who give their strong opinions about the way you should take care of this child. This parent may be wondering if anything they do for their child is even making a difference. They are often losing a little bit of their confidence every day.
- Exhausted – Some of these parents stay weary. Their normal daily responsibilities of caregiving along with the agonizing, potentially life-changing decisions they have to make for their child and their family — piled on top of what we all have to deal with trying to thrive in this crazy world, weigh so heavily on these parents.
- Deer in the headlights. – These are the parents who have just recently received a diagnosis or new medical or educational news. They feel blindsided and are trying hard to get some footing.
What you can do:
1. HAVE COMPASSION REGARDING THE PARENTS’ JOURNEY
Most parents have not signed up for this, and of those who have walked into disability parenting on purpose (foster care/adoption), they probably could not have imagined how hard it could be. Just like those raising biological children. They may be reeling from a new diagnosis and trying to find their footing. They may be dealing with a new stage in the child or adult’s life and feeling a little off balance. They may be dealing with complex medical, educational, social, psychological concerns. They are juggling many hats, many balls, and many plates. Some have been turned away from other churches. Some may have decided to leave other churches because of their experiences. Please realize also these parents may have more than one child, aging parents, a challenging job, etc., that may be adding to their overwhelm.
Here are some real life stories:
One mom went to pick up her three year old child with Down Syndrome and the Sunday school teacher greeted her with the words “he does not belong here.”
Yeah – OUCH!
The teacher who said this was a very godly woman and most likely what she meant was that there might be a better place for this child to be served on a Sunday morning.
Another parent went to pick up her son from kindergarten Sunday School and the teacher made this comment, “You have GOT to do something with this child.”
Yeah – OUCH, again!
This teacher and her husband had only one child – a quiet little girl. She had never experienced a little boy with sensory issues who could be hyperactive.
This family found out later that their child was allergic to so many things outside and inside and all kinds of foods. This little guy was feeling quite miserable but no one knew the underlying cause for some of his behavior. What the teacher also didn’t consider was that this family was dealing with a younger sibling, a toddler, who had serious health issues and developmental delays and that every day presented a difficult set of circumstances for these parents. Had this particular teacher extended grace and had a solutions-based mindset instead of being reactionary in her frustration, the approach would have been vastly different.
We tell you all this because as Volunteers and Staff you might catch the fact that these parents who have children with challenges (whatever those challenges are) are struggling to find a new norm around every corner.
And then, this was another mom’s refreshing experience:
“Our church just made a way for my daughter to attend church right away. They encouraged us when we made the decision to adopt her. Her teacher and helper knew us before I ever knew their names.”
And we know that, if you are reading this, you are one who desires to approach these families with compassion.
2. LOVE THEIR CHILD & EXTEND CARE TO THE WHOLE FAMILY
*Get to know each child as an individual.
Our daughter Amy recalls this experience: One Sunday morning, it was nice outside, and the leader thought it would be good to have our class outside. We landed in a little garden with benches not far from our classroom. It was a beautiful setting, however, there was a fountain with a little waterfall right in the center of those benches. Hearing loss, people talking normally, and running water are not good combinations. I could not hear anything the teacher was saying.
*Be committed to finding a place for each child.
For example:
Problem: “I have a daughter who’s anxiety prevents her from going to church. Not sure if there is anything they can do but maybe an online group would be nice or a much smaller class for her. Idk.”
Potential solution: Create an online group for this child and some peers. Have a group of her peers visit her at home. Have some peers reach out through cards and letters.
*Help the child thrive, not just survive.
For example, check out these problems and potential solutions:
Problem: My son has epilepsy. Strobe lights have become every day in some churches, even more so during special events and holidays. He is very social, but we limit some events for this reason.
Fact:
It has been determined that
- exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures. Photosensitive epilepsy is when seizures are triggered by flashing lights or contrasting light and dark patterns.
- Also, flashing or patterned effects can make people with or without epilepsy feel disorientated, uncomfortable or unwell.
Potential Solution: create an environment in regular ministry where strobe lights are not used. If that is not a possibility, then create activities and events where it is advertised that strobes will not be used.
Problem: Oftentimes at church, people hurry my son to eat. He has swallowing issues and so he has no choice but to take more time, if he wants to eat. CB
Potential Solution: Slow down the regular agenda enough for this child to have time to eat. Provide quiet activities for the children who are finished eating to do until all children are finished with the snack.
*Be flexible
If they need to sit on the floor, let them.
If they need to rock, let them.
If they need to use a fidget, offer one.
If they need a quieter space for a time, provide one.
If they need to walk around the room, let them.
If they need to hold a special toy, let them.
One mom’s experience:
A friend of ours shared with us that in the preschool and Kindergarten years, her daughter who experienced trauma through infantile spasms – a rare but serious type of epilepsy – was full of anxiety. This anxiety showed through a form of mutism. She communicated just fine at home while relaxed but at church she didn’t utter a word in class and she needed to hold a teacher’s hand at all times. While she was in Pre-school her main teacher knew this about her and did his best to make sure an adult or teen helper’s hand was alway available for this child. But, when she got to Kindergarten, it was a different experience.
The mom explains…
One teacher we encountered while my daughter was in kindergarten, just didn’t know what it took for my daughter to go in there and the battle we went through every Sunday. But what she said was enough to make me cry and move my daughter to a different room. I was told harshly that I must homeschool her because she was awkward. And then she asked me in front of my little girl if she even knew how to talk or did she just act mute… if she had brain damage or something because she wouldn’t respond to anyone. I was so upset. As a former Sunday school teacher, I understood the frustration. However, it could have been handled differently… more delicately. My daughter later told me that she felt like the teacher didn’t like her or want her there.
Other ways that you can love the child with the disability and also extend care to the other family:
- Share the gospel in various and creative ways
- Ask how the parents are doing.
- Ask how you might pray for them.
- Ask how siblings are doing.
- Be discerning about what information to share about their child’s time with you.
- Look for positive things throughout to share and share those first.
- It is not necessary to share that child’s common challenging behavior every time the child is picked up.
3. ADDRESS THE HARD THINGS WITH GRACE
- It’s okay to ask the parent for some suggestions on what might help their child be successful.
- It’s okay to let them know when you cannot accommodate their desire or request, but come to them with a spirit of making SOMETHING work.
- It’s okay to address with parents a challenging situation with their child:
Example: A director of special needs in a church shared this with us:
Challenging Experience that ended very Positively – We had a student who was acting in socially unacceptable ways in the classroom and restroom, as this student does not understand social norms like privacy. Our attempts to redirect her were not working at all. We were at a loss as to what to do and worried that she may not be able to come to class anymore, out of consideration for the other students.
We ended up having a meeting with myself (as director of special needs), our behavior support lead, our children’s ministry director and the student’s mother to have a frank discussion about all of this. During that meeting, we were able to discuss some really awkward things in a way that didn’t feel that awkward and the family still felt loved and accepted. No one had a solid solution, so we agreed on a plan to try and then we would see if that worked. If it didn’t work, we agreed that we would page the parents to get her for that day and take her out of the classroom, but then discuss a new option and try again the next week.
We tried option one and it MADE THINGS WAY WORSE. But we stuck to the plan and agreed to try again the next week. Then we asked some other Autism professionals we knew for advice and they had a different idea to try. This idea worked like a charm and solved the problem.
What I felt was so positive about the whole experience was how everyone worked together without embarrassment or judgment or pressure to have all the answers. I felt really fulfilled by the teamwork this entailed. I believe the reason we were able to do this is because we always valued relationship between the ministry team, church staff, and the families. That made all the difference. BS
To recap: We know that you are in disability ministry because you have a big heart. We know that you work hard. We know that disability ministry is very challenging. This blog post is our way of coming alongside you, ministry staff and volunteer, to give you some insight into how to build strong relationships with the parents and caregivers of those you serve in your ministry.
On behalf of caregivers and parents everywhere, thank you for:
Having compassion for the parents and caregivers in their journey,
Showing your love in action, and
Addressing the hard things with grace.
Much Love,
Tom and Julie Meekins
CONNECT WITH US:
We invite you to connect with Tom, Julie, and Amy through:
Email: champions4parents@gmail.com
Phone: 410-746-9010 (Voice or Text)
Facebook: www.facebook.com/Champions4Parents
Don’t forget our website: www.Champions4Parents.com
And check out Amy’s book at www.HeartReCHARGE.com
